By the way, my official diagnosis at this time is Neurodegenerative Polyneuropathy and Neuropathic Muscular Atrophy with periods of exacerbations.
Do I keep trying to pursue MS Specialists?
Girl, you have a LOT going on here.
Well, to start off, if you were only given 125mg solumedrol, then that could be the first problem I see here. Are you sure he only gave you 125 mg?
Which symptoms on your list are "new" versus old? I wasn't sure which were which.
You do need to see your neuro. Sorry to hear he is a stroke specialist, but he can still work with you on this relapse while you keep searching for another one. Is ther any possibility that you get a script for a new MRI, which should be done when you are in a relapse, and take it to another city that has a better MRI?
What happened with going to USC?
I'm sorry I have more questions than answers. Perpahs we can all help you sort this out, but we do need a few answers so we can help you find other options.
Waiting to hear from you. Take care.
Those symptoms I listed are my new ones...Except for the eye thingy, the new symptoms started beginning of May. Well, the facial pain and crushing pain in right ribs isn't new...those started with my last exacerbation June 09....sorry.
My every day symptoms that are always there:
weak legs, fatigue, pretty bad nerve pain in legs and right arm
double vision (for a year now), tinglind in right backside of head
loud ringing in ears )for a year now), cold feet
on off swallowing trouble (for a year now)
heat and light sensitive
drop foot (have metal brace), balance problems, sober drunk
Solumedrol. Yes, it was 125 mg IV in ER. I double checked. I thought that was low because the last time I had it I thought I got 500 mg shots in butt for 5 days then dose pack.
I also got my pain meds changed beginning of May and started Baclofen June 1, so this could account for pain decrease....which in turn helped me sleep and less fatigue.
New script for new MRI's: Yeah, I know my primary will do that for me...I can ask him for that next week when he comes back. I thought there was only 3T available in Los Angeles (USC) and San Fransisco (5 hours, one way). I just found out they have a 3T in Santa Barbara (1 hour away). I hope my primary can send me there.
I put in a call to my neuro. I was thinking I should go see him and lay everything out on the table with him....and go from there. I haven't received a call back yet...maybe tomorrow. It has happened in the last year that I never get the return call.
USC crashed and burned for insurance reasons. Referral denied because it is out of county. Which blows SF away from me too.
Maybe it is just this foggy state I am in right now....I just kind of feel like I lost which road I am suppose to go on. Could use a GPS right about now....
Funny, I don't really feel depressed or anxious. I just don't know where to turn at this time.
Also, what exactly does my diagnosis that I have now mean? I can't seem to find anything on the net....
Hi Addi, I'm so sorry to hear about all of this!! I was so hopeful for you when I found out that you were going to be able to go to USC.
Here is what I am thinking about the USC thing. I know this would be difficult, but do you think calling the MS doctor or clinic and explaining your problem might help? Perhaps there is a way that you can set up a payment plan. I would set forth an appeal on your insurance, let them know that you aren't going to back down on this. Let them know the serious nature of your illness and their own responsibility to help you so that your symptoms don't create more disability.
I suggest putting together all of your paperwork, all your logs, updates etc. and putting them together in a chronological order. I would compose what you feel has happened to your body and how the medical community has responded or failed to respond. I suggest laying it all out for the neuro. and let him know that you have to have treatment and proper diagnosis-workup sooner rather than later. If he is unwilling to take you seriously then he needs to refer you and make that referral go through.
You need a good advocate!! I am new to all of this but I'm wondering if there is someone available from any of the MS associations.
Is there someone strong in your life that can do some of these things?
This really sounds dreadful. I'm so sorry this has happened, and I'm ticked that your referral was 'refused'. That is just ridiculous!!
Sorry to hear of all your struggles and frustrations in trying to find competent medical care.
Glad you recorded the eye episode for a reference.
As for the strength of the MRI, please don't lose sight of the fact that the software program on the MRI can change everything. My old MRIs were done on a 1.5T BUT with the most up to date software available anywhere. I had one done on a 3T and they didn't even have a software program set-up for MS protocol. Needless to say the 1.5 with the superior software had the best images and the 3T was the worst.
Try to see your neuro asap and let him help you sort it out even if he's a stroke specialist. It can take a while to rule out all the mimics. I was told I had Chronic Demyelinating Inflammatory Polyneuropathy, since I had neuropathy but not the "right " lesions for MS. Wrong. The lesions just showed up late to the party.
Thinking of you,
Hey, Lois - Thanks so much. I was disappointed, too. I am on Medicaid and do not work (cannot work). A payment plan is not even close to feasible. I have called USC. I talked with three different people. My primary's nurse went above and beyond with trying to get me in, too.
I haven't called my insurance regarding this, but that is a good idea. They are usually really good and answering anything I ask...and I do have to say that besides not approving Provigil, they have always approved everything my doctor asks for. And, I can say that I am not cheap. My prescriptions alone cost $850 a month.
I have a medical record book put together now...I finally finished it today. It is very organized and all of my records are in it. I started it to have everything organized and ready for USC. I am working on my time line and plan to show how I have deteriorated in the last 5 years. When I got it all done and looked it over was when I made the decision to go ahead and go see my stroke neuro. Hopefully they will call me back tomorrow...if not, I will call again in the afternoon.
This neuro is suppose to be a really, really good neuro. Honestly, if I had a stroke, I would want him. But, as far as the issues I am having, I don't know. His two responses to me that I keep remembering are:
Pull up your boot straps
I have a bunch of people in the same boat you are...they all have neurological problems without a diagnosis of anything
I have only seen him twice. The first one, he did a full neuro exam and seemed to listen to what I was saying. The second visit, a student examined me, then he came in for just a few minutes and said those two things to me....he wasn't present for the exam and didn't examine me at all. He said he would see me in three months....and I have called repeatedly with no one ever calling me back. It has been a year now since that last visit.
I am willing to give him another try...reluctantly. Only because I don't feel like I really have a choice...and I need help.
Ren - I saw something on here about just what you said. How do I know what software they use and how good it is? I did call the MRI place that has done all mine in the last 2 years. I was trying to find out if they used MS protocols on my MRIs. They told me they could not give me that info over the phone. So I asked them how to tell if they were used and they said they couldn't tell me that either. ?? I got the same answer when I asked about slices. So, how do you know if MS protocols were used?
I agree with everyone else. 1- you need a new doctor, I hope that appealing to your insurance will work and you can go to USC. Or at the very least they will send you to an MS specialist that they will cover.
2- my neuro always wants to see you if you are having any issues (new or a flare of old ones). It is the reason there is always a minimum 2 hour wait to see him...but when you are having issues you should be seen so it can be documented. I would not trust any neuro that does not want to at least examine you when you are having issues :-(
((hugs)) my friend. I hope you are feeling better today.
I tried to look up your current diagnosis on the web too and figured they must have this wrong because it looks like it isn't really a diagnosis at all.
I think as far as the dx goes, that Ren is onto something that seems for palpable - Chronic Demyelinating Inflammatory Polyneuropathy. Who gave you that other dx anyway?
Give that neuro's office a call this morning. If they don't call back by noon, then call them again. When you get in to see him, hope that is this or next week at latest, lay it out on the table like you said and then push him for some answers. I'd let him order the new MRI and let him know that you would like a referral to a facility with a 3T.
When you lay out the new symptoms with him, I'd suggest you pick the only 2-3 of the most serious ones - ones that are affecting your daily life the most. If he sees all these symptoms, he might jump to the conclusion that you are having depression or severe anxiety. That's how we have to present things to these guys.
One more thing...That 125 mg of solumedrol was a joke. I hate to tell you this, but you are probably going to be put on a 3 or 5 day course of the "big guns" which is 1,000mg dose. That puny dose they gave you in the ER would have only helped me for a day at the most. They gave that to me when I was in the ER back in April, just prior to them deciding to admit me, and when I saw they were putting it in my hep lock as a type of shot, I asked the dose because 1,000 mg is not given that way. I started laughing when they told the dose. I said that wouldn't do a thing to help and suggested we needed more. The nurse and doctor had to look it up in their PDR to see if it was ok to give more. They came back with another injection of 125 mg. Whatever. I did get the 5 day, correct treatment, a few days later. So, moral of the story, when your symptoms are that bad, don't let them get by with this dose again. Of course this is something you need to bring up with your doctor and see if he concurred with this low dose treatment.
OK, Addi, hang in there. This will work itself out. Sorry for the long post.
P.S. You live an hour from Santa Barbara? I am soooo jealous. :)
Addi, I hope you didn't think I was telling you to pull yourself up with your bootstraps! I was trying to find a way for you to go to USC, UCLA or San Fran. I was worried about you becuase you werent able to get what you needed. I would never infer that anyone pull themselves up by their bootstraps. I'm sorry if it sounded that way.
Perhaps I was too impassioned when I responded.
Oh geez, I just re-read the entire post and realized you were referring to your doctor.
Okay, I just got my call back from my wonderful neuro office. At this point, I am filing a complaint with my insurance company regarding him.
I was told he could "work me in" on Sept. 6. This is not an appointment, but the earliest time he could get to me. I could also be put on a cancellation list.
At first I said "okay"....feeling dismissed again. Then a switch turned on. I didn't blow my stack, but I firmly told her that this was ridiculous. I restated that I was exacerbating and had been for several weeks. I restated that I had been to the ER and an Ophtho and was told to see my neuro. I told her I was NOT interested in being "worked in" on Sept. 6. I told her that any good neuro would want to see his patient now with a situation like mine. I told her I would be reporting this. She said, please remember that he is only in this office on Thursdays. I said "and???" She asked me if I wanted her to relay this message to my neuro/his nurse. I said "most definitrely".
I will NOT be seeing him. I will turn them down if I receive another call.
What if what happened day before yesterday had nothing to do with my neuro problems at all? What if it was a TA? My grandma had a couple of strokes.
Maybe I should just go to the ER in Santa Barbara. Just in case it isn't related to my neuro issues. If I go there, then maybe I will get MRI on the 3T.
I am calling my insurance right now, either way.
I did read what you all said and am listening and agree to it all. Thank you for helping me out here.
I have spoken with all three of the MRI/Radiology departments I have used and they kindly gave me the information regarding the type of MRI used and when the last software update was.
For a general idea, the written report of your MRI should list the type of equipment and the slice sizes in the narrative.
If I was concerned, as I believe you are, I would go to Santa Barbara for a second set of eyes to look as long as you have someone to drive you. You should NOT drive an hour while symptomatic.
Keeping you in my thoughts,
Good luck! While you're dealing with that, give this a read - it's about a woman who was given the worst runaround by her ER, and finally got treated for her MS.
YOU GO GIRL!!!
Anger can really help when it's focused like it is for you right now. This neurologist is clearly not willing to help, or his office staff won't approach him with the serious nature of your need.
Seriously, I would have someone, a friend or your mother drive to Santa Barbara and go to the emergency room. Hopefully they will get a consult with a neurologist and will treat you. You may even get a referral to go through to USC. Don't let them give you the run a round either.
I am thinking and praying for you
My reports do not list slice size. It does list the equipment. I am going to go to Santa Barbara...to their ER. At least to make sure it was not a TA...or if it was.
I did call my insurance. Spoke to a really nice woman. She is sending me the form for filing a complaint against neuro. She did confirm again to me that USC was not an approved provider...but UCLA is. I looked that up and they do have an MS Clinic there.
So, I put a call into my primary nurse to start the referral process for that. I also called them to verify that I can go there...and they said yes.
I haven't driven in a year. Double vision (always there) stopped me from that. I would never even attempt it right now. My mom is my driver.
Thanks, Jen...I did read it and printed it out.
Lois - Yeah, my mom is going to take me to the ER in Santa Barbara a little later today. USC is simply not going to happen...UCLA looks good though.
I am angry! But not in a neurotic kind of way, if that makes sense. I guess I am just tired of being dismissed. I just have a strong feeling inside me that is saying I refuse to be dismissed any longer.
I have my medical record book in hand, my mom is going with me and I am am not going to allow anyone to dismiss me anymore.
Hugs to all of you and thank you again,
It's OK to be angry, when you have been wronged, that is not neurotic it is human.
I wondered about UCLA, I know it's not SC but it is a top-notch teaching hospital---it's just a huge place.
I am so glad that your mom is taking you to Santa Barbara-----
let us know how things go